A Match for Bay: Eight-year-old Nikkei battles leukemia

While most children play outside this summer, 8-year-old Baylor “Bay” Nihei Fredrickson from Albany, Calif engages in Nerf gun battles with nurses in between chemotherapy rounds.

Baylor, who is of Japanese and German descent, was diagnosed with acute myelogenous leukemia in February 2012 at 5 years old. According to his mother, Shari Nihei Fredrickson, Baylor experienced cold-like symptoms almost constantly leading up to his diagnosis. In addition to having a runny nose and coughing, he began to develop bald spots on his head because of a condition called alopecia areata.

After a friend of Nihei Fredrickson suggested she have Baylor tested for allergies, Baylor’s pediatrician ordered an allergy test with a routine blood panel. The next day, the pediatrician called Nihei Fredrickson and told her to take Baylor out of kindergarten and take him to the Children’s Hospital right away.

Baylor went through four intense rounds of chemotherapy, staying in the hospital for 158 days with 19 days off between rounds, Nihei Fredrickson said. He was discharged from the hospital in August 2012.

Unfortunately, Baylor relapsed in April 2014 and has since begun his campaign with the Asian American Donor Program to find a bone marrow donor match.

Bay’s Difficult Search for a Donor

According to AADP Executive Director Carol Gillespie, more than 22 million people have registered to become a bone marrow donor. Despite the seemingly high number of people in the registry, no one has been a match for Baylor.

Gillespie said Baylor can only match with someone who is half Asian and Caucasian.

Nihei Fredrickson’s 11-year-old daughter Maddie was Baylor’s only hope for a 100 percent match. Although there was a 25 percent chance she would be a match, the results came back negative.

Because of the difficult donor search, Gillespie said efforts through mainstream media and social media have to be “aggressive.”

“This community is not difficult to recruit in because they tend to be younger people, however, this community is not all that large,” she said.

Stem Cell Transplant

On July 21, Nihei Fredrickson posted an update to Baylor’s followers on his “A Match for Bay- Rally4Bay” Facebook campaign page. Nihei Fredrickson said the results of his Minimal residual disease testing came back negative, meaning no leukemia was detected in his body.

But since no marrow donor match has been found thus far, Baylor was expected to begin receiving strong courses of chemotherapy on July 24 in preparation for his umbilical cord blood stem cell transplant that has been scheduled for July 30. The frozen umbilical cord, which was donated from an infant girl in Germany, is a 5/6 match for Baylor.

Nihei Fredrickson said doctors told her that a stem cell transplant is best for Baylor in case the cancer comes back mutated into something chemotherapy cannot destroy.

However, Nihei Fredrickson said that just because Baylor has the option for a stem cell transplant, it doesn’t mean the search for his marrow donor match should stop. Not only is there a possibility that Baylor will relapse again in the future, but Nihei Fredrickson said she found that, through this experience, there is a “global concern” for Asian and other mixed Asian donors in the donor registry.

“Doctors say if Bay should relapse in a year or two, he would need that match again,” she said. “I don’t want to stop campaigning until there are a good amount of hapas and hafus on the national and international registry.”

Impact Through Facebook

Baylor’s Facebook campaign page was created on April 29. Since then the page, which is managed by Nihei Fredrickson and their AADP coordinator Ruby Law, has generated more than 8, 400 “likes.”

Hearing this, Baylor said he thinks it is “cool because I know that, that many people are looking out for me.”

According to Law, each post reaches about 2,500 to 10,000 people and Baylor’s story has encouraged more than 10,000 people to register to become donors.

Nihei Fredrickson said Baylor’s baseball coach was a huge help in generating “likes” on Baylor’s campaign page. His coach is well-known writer Michael Lewis, author of bestsellers “The Blind Side” and “Moneyball.”

Lewis wrote and shared a post on his own verified Facebook page on May 30 about Baylor’s fight, explaining why Baylor, who was a catcher on his little league team Red Wings, did not show up for opening day. Lewis’ post reached more than 118,000 people who liked his page and since then, the post has been shared more than 536,000 times.

In his post, Lewis encouraged his followers to register to become donors. He compared being a donor match to winning the lottery.

“It won’t cost you a penny but you won’t make any money either,” he wrote. “On the other hand, I can almost promise you this: the winner of this lottery will, for some time to come, feel like a million bucks.”

Positive Energy and Impact on Family

Though his fight is tough and the chemotherapy sessions are exhausting, Baylor remains positive and said he feels “great.” According to Gillespie, Baylor looks happy when she visits him at the hospital.

Baylor spends most of his day playing Minecraft or other video games and reading. He already knows what he would like to do as a grown up.

“For some reason I want to be a firefighter that jumps out of an airplane,” he said. “It sounds fun and a good adventure.”

Gillespie said she thinks Baylor’s positive attitude and lack of complaints stems from his parents.

“Their energy is infectious and Baylor is surrounded by it,” she said.

However, Nihei Fredrickson said Baylor’s journey has been “heartbreaking” for her as a parent.

“How do (you) answer questions like ‘am I going to die?’ ‘What if they don’t find a match? Will they just let me die?’” she said. “Baylor is only eight, he shouldn’t have to think about these sorts of questions.”

But through Baylor’s fight, Nihei Fredrickson said she and her family have become stronger and she said she is grateful for the amount of support they have received.

Ease of Registering

Gillespie said registering to become a donor is easy. One simply needs to complete a consent form and submit a few cheek swabs for tissue testing. People can register at a live drive or a home kit can be sent to them. Registered donors join the national Be The Match Registry.

Future Drives

Buddhist Church of San Francisco’s Ginza Bazaar Saturday, July 26 from noon to 6 p.m. and Obon festival Sunday, July 27 from noon to 4 p.m. at 1881 Pine St. (Octavia) in San Francisco’s Japantown.

Chaand Raat at Mehran Restaurant, Sunday, July 27 from 7:30 to 11:30 p.m. at 5774 Mowry School Road, Newark, Calif.